My First rideATAXIA

Yesterday I did my first rideATAXIA: the 4.5-mile ride at Railroad Park in Lewisville, Texas.

If you haven't heard of it, rideATAXIA is FARA's cycling event. People with Friedreich's ataxia, their families, friends, and total strangers ride together to raise money for research. Some ride bikes, some ride trikes, some ride handcycles. Everybody rides for the same reason, and it's right there on the jersey: Together we will cure FA.

The trike

I rode a recumbent trike. You sit low and lean back, with three wheels so balance isn't a factor. For someone whose balance left the chat a while ago, that matters. FA takes a lot of things from you slowly. Riding, it turns out, doesn't have to be one of them. It just has to look a little different.

Neon helmet, jersey, wind in my face, 4.5 miles. I didn't stop smiling the whole time, and I have the photos to prove it.

Team Tipsy Without Tequila

I didn't ride alone. Our team was the three of us: me, Hannah Rasberry, and Nina Cope. We called ourselves Tipsy Without Tequila. (If you've ever watched someone with ataxia walk across a room, you get the joke.)

In just one week, we raised $9,050 for FA research. One week. I'm still a little stunned, and so grateful to every single person who gave.

The dazzle

A group of zebras is called a dazzle, and yesterday I got to see the dazzle in person. That's the moment I'll carry with me.

Here's the part I wasn't ready for.

Most days, I'm the only person in the room with FA. Most people I meet have never heard of it. I've written before that empathy and actually understanding a lived experience aren't the same thing, and most of the time I live in the gap between the two.

Yesterday there was no gap.

I've never seen so many people with FA in one place. People in wheelchairs, on trikes, on bikes, walking with family. I got to meet Kyle Bryant in person, and so many others who are part of the FA FAmily, plus the caregivers who show up for us every single day.

Everywhere I looked there were CURE FA shirts and matching blue sunglasses. People who didn't need FA explained. People who knew what a hard day looks like without asking. People riding next to me on the path, cheering like we'd won something. Maybe we had.

And the knowledge in that place. Between the people living with FA, the parents, the spouses, the researchers, and the FARA staff, the amount of experience in one parking lot was out of this world. Tips for equipment, insurance fights, trials, travel, all of it, traded like it was nothing. You can't Google that.

We ended the day around a long table at dinner, swapping stories and eating way too much. It was one of those days where you don't realize how much you needed something until you have it.

Why it matters

Every mile and every dollar from rideATAXIA goes to FARA, which funds the research that's actually moving FA forward. Some of those projects are on my trial tracker right now. Riding is fun. Riding for a cure is better.

Next year

Our team will definitely be back next year. Probably with more miles, definitely with more sunglasses.

The next event on our radar is the FA Soirée, so stay tuned for that.

If you're living with FA and you've never done a rideATAXIA, go. You don't have to be fast. You don't have to ride far. You just have to show up, and you'll find your people there.

Somebody said that it couldn't be done
  But he with a chuckle replied
That "maybe it couldn't," but he would be one
  Who wouldn't say so till he'd tried.
So he buckled right in with the trace of a grin
  On his face. If he worried he hid it.
He started to sing as he tackled the thing
  That couldn't be done, and he did it.

— Edgar Guest, "It Couldn't Be Done"

And remember: together we will cure FA. 🦓